Back in February we shared some information regarding a bevy of new publications in the rare disease space, including Uncommon Challenges; Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers:

** MarbleRoad board member Catherine Calhoun has published her story in a chapter in Uncommon Challenges; Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers. Proceeds from the book will support the Calhoun Bone Pain Project (her son Billy’s Bone Research Fund), along with several other charities of each author’s affiliation. Order your copy on today!

Caregivers are people who take care of other adults, often parents or spouses, or children with special medical needs. Some caregivers are family members; others are paid. They help with:

• Food shopping and cooking
• House cleaning
• Paying bills
• Giving medicine
• Going to the toilet, bathing and dressing
• Eating
• Providing company and emotional support

Caregiving is hard, and caregivers of chronically ill people often feel stress. They are “on call” 24 hours a day, 7 days a week.

Last Friday, the White House and the US Department of Health and Human Services pulled the plug on the Community Living Assistance Services and Supports Act, known as the “CLASS Act” (see previous MarbleRoad blog post on the CLASS Act); a provision in the landmark Patient Protection and Affordable Care Act ,which would have created a new long-term care insurance plan option for families.

The late Senator Ted Kennedy was a major champion for the inclusion of the CLASS Act in PPACA, which would have helped to support the needs of the estimated 65 million Americans that provide unpaid care to seniors or people with disabilities. From the White House Blog back in March 2010:

**CLASS Act benefits can be used to compensate family caregivers, who often make huge financial sacrifices. And receiving benefits from this program would not have any effect on eligibility for other government programs.

** The health reform legislation also creates a new Medicare pilot program aimed at helping patients and caregivers successfully negotiate the transition from a hospital stay to their homes or other care settings. And it provides new funding for Aging and Disability Resource Centers, which provide information and assistance to caregivers and people with long-term care needs.

In an Op-Ed piece in the HUFF/POST50, DHHS Secretary Kathleen Sebelius shared that:

… our department has worked steadily to find a financially sustainable model for CLASS. Over the last 19 months, we’ve examined the long-term care market, modeled possible plan designs, and studied the CLASS statute, consulting at every step of the way with outside actuaries, insurers, and consumer groups.

When it became clear that most basic benefit plans wouldn’t work, we looked at other possibilities. Recognizing the enormous need in this country for better long-term care insurance options, we cast as wide a net as possible in searching for a model that could succeed. But as a report our department is releasing today shows, we have not identified a way to make CLASS work at this time.

Memorandum on the CLASS Program from Kathy Greenlee, CLASS Administrator to Secretary Sebelius

A Report on the Actuarial, Marketing, and Legal Analyses of the CLASS Program by the US Department of Health and Human Services


On a related note, I was recently introduced to Caregiver Village: A Village of support, friendship and fun.

**At Caregiver Village, we’re here to serve the needs and concerns of today’s caregivers. Its a place to connect with other people who face similar challenges, obtain valuable resources, share journal entries and read those of others about caregiving journeys. Visitors can meet well-known authors and participate in their book clubs and play our Village Chronicles game, for learning or just for fun. The Village Chronicles is an entertaining on-line mystery adventure story that integrates caregiving situations into a game-like atmosphere. You can connect with your friends, find links to valuable resources within Caregiver Village, solve puzzles, achieve ranks, and earn badges. It’s a learning experience that is engaging and fun.

Right now, for each new person that joins Caregiver Village, they have agreed to donate $1 to charity, including Alzheimer’s Association, Autism Society, Autism Speaks, CancerCare, Libbie’s Adult Day Care, National Military Family Association, Police Wives, and the United Mitochondrial Disease Foundation.

The draw to Caregiver Village and the advantages it offers are many:

• It’s a game – its fun. Games work because they’re fun. They’re fun because they require focus and effort and result in achievements that are specific and tangible. The Village Chronicles virtual game is built to be fun. It requires focus, it takes effort to solve the puzzles (and the ultimate mystery of the story that continues episode to episode), and achievements are earned along the way. It’s a uniquely powerful way for family caregivers to learn better self-care, stress management skills and positive attitudes about their caregiving work.
• It builds community. Linking with other people helps us understand and achieve things we couldn’t possibly realize alone, in a way that fills a deep human need for connection and companionship. In Caregiver Village, neighbors help each other by providing advice, recommending resources and offering crucial words of encouragement and support. Groups – called “book clubs” in Village terms – are led by experts who can help guide, coach and nurture the strength of the individual and the group. It’s just more fun to be a part of a team.
• It facilitates sharing and affirms choice. In Caregiver Village neighbors use a time-tested technique of journaling their experience to reinforce the “choice” aspect of their work. It’s a way to express emotions, process difficult experiences and gain deeper understanding into the complex and challenging life of a caregiver, arriving at a re-affirmation of the choice involved in their work. Caregiver Village neighbors may choose to display this choice, too, in the form of a badge that proclaims, “I’m a Proud Family Caregiver – my time, my choice, my gift.”
• It’s loaded with tools. Mastering really challenging games often means acquiring an array of tools to help you succeed. For caregivers, tools can help them succeed, as well. Tools provided in Caregiver Village include information about books, organizations, products and services that can offer tangible support. It includes exclusive Caregiver Village tip sheets and online training courses that offer tricks and tips from the experts who have mastered the “game” of caregiving.
• Family caregivers provide well over 90% of all caregiving services in the U.S. today. It’s time to break the pattern of stress, sickness, despair and dysfunction that represents family caregiving today. It’s time, with Caregiver Village, to change the lives of family caregivers.